Should I ask my doctor to test me for lupus??

Hi there, I want to ask my doctor but I don't want to just assume and would feel a bit silly!

I never even heard of it until my boyfriend and I read an article about Selena Gomez and we looked it up wondering what it was, at first he was joking when it mentioned rashes, that can be permanent then as he kept reading he went from joking to serious.

Basically, I get rashes, so far diagnosed as eczema, I can't get rid of them, my hands wrists and face are worse effected. I have zero energy, especially lately, but get eight or nine hours sleep every day, I could nap twice in a day if allowed. I have what I just thought was weak wrists, pain, and Raynaud's phenomenon, which I just thought was bad circulation when my fingers and toes went white and icy, when it goes off you could actually nip my toes hard with tweezers and id barely feel a thing,until we looked it up. Frequent chest pains. I've suffered for years with these things individually and was just wondering if anyone thought that I should bother asking for a test, or just leave it and get on with things and that its just unrelated things? I don't want to walk through the doctors doors yet again and not get sorted

I have been given all sorts of medication, creams, inhalers, been sent to cancer clinics and let me tell you its not fun at the age of 21! I've been told its just such and such, its allergies, its not allergies. I'm just so so so sick and tired of running around in circles and hitting a brick wall. I've been SO tired lately, I have a third year uni assignment due in Friday and I just havent had the energy to do it, which is so bad!

I am going to go back to the doctor yet again, but I've never mentioned all these things to the doctor before, I hate to self diagnose, but should I ask?

Thank you!

7 Replies

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  • Hi Stekezziah

    I definitely think you should ask your GP for a blood test or a referral to a Rheumatologist and take the article with you. Your symptoms warrant it I think and let's face it it's your life that your trying to live!. Good luck with your university work. X

  • without a doubt you should get reffered. its your body and oddly its your doctors job. good luck

  • Hi Stkezziah,

    I would recommend seeing your GP just to talk about your symptoms and concerns. It is worth taking a list of all of your symptoms so that they can see the whole picture, rather than everything in isolation. This will improve the chances of them seeing a wider pattern. If you think it would help I can send you an information pack which contains information on lupus, the symptoms and diagnosis. It may even be an idea to take the information along with you on your next visit to your GP.

    There are some blood tests that your GP can do to see if your symptoms could be the result of lupus. An ANA (anti-nuclear antibody) test would generally be the starting point as this is positive in the majority of lupus patients. You may wish to ask for a referral to a rheumatologist who will be likely to have more expertise with lupus.

    If you would like me to send the information pack to you, just drop me a quick email with your address and I’ll pop it in the post for you. hayley@lupusuk.org.uk

    Best wishes,

    Hayley

    LUPUS UK

  • Hi stkezziah,

    I agree with everything Paul and the others have said. Over time my symptoms became so bizarre and frequent that I made a diary of my symptoms and took photos of facial and body rashes when they appeared. I believe that this is what got me a rhemy referral as my gp could see the whole picture and new that it was something auto immune and requested an ana test which came back positive and a very high esr (inflammation marker) however not every lupie has a positive ana but the majority do.

    At the end of the day it's your health, your very young and we know our own bodies. I just knew something was wrong for at least a year before my diagnosis and spent far too long being fobbed off!

    Wishing you the best of luck, hang in their and be persistent. Sarah X

  • Thank you so much everyone! I'm currently 23 and I've been suffering with various things over the past few years and keep going to the doctors who seem to keep trying to give me things to hide what's wrong, never to find out why theyre there. I'm currently sitting trying to focus on this essay, with a mad headache, finding it quite difficult I think I'm definitely going to mention it to the doctor. My dad has rheumatoid arthritis don't know if that means autoimmune disorders are in the family, but he says so. I will definitely email you hayley! Thank you so much!

  • Hi there

    I would go to the gp and ask for a blood test. Tell them your symptoms and go from there. The blood test is and ANA screen it can be added to a full blood count and it would not be a problem for your gp. In my case they found indicators for lupus in the blood test mentioned. The gp then referred me to a rheumatologist to have findings confirmed. It best to put your mind at rest and it's only a blood test after all. If anything comes back in the results go from there. Good luck. Let us know how u get on

    Esky x

  • Of course look into it ask your doctor for a test tell him your symptoms most doctors have zero knowledge of lupus which is why the actual diagnosis of lupus takes longer as it is most likely to mimic other conditions like rheumatoid arthritis for example. So explain your symptoms as they are and get a more detailed opinion and options to get a more accurate diagnosis

    Good Luck

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